jtp Posted April 11, 2013 Report Share Posted April 11, 2013 My DS was doing so well we were planning on doing a trial off ABX(azithromycin 250mg daily) this month(PANS caused by mycoplasma). He had two BM's in a row that looked like bakers yeast(sorry tmi?) so we had our Integrative MD run a 3 day stool test. It came back HIgh for Candida and Sacchamyces Cervisae(sp?)another yeast. It also came back with little or no beneficial bacteria. So he prescribed VSL#3 Probiotics then after a week add Oregano OIl Tablet 2x a day, A week later add Grapefruit seed extract pill 2 x aday. The stool test noted that these supplements would be beneficial to killing yeast. He had tried Nystatin but couldn't tolerate it. Our Pandas Dr prescribed Lamisel but for now we are trying the more natural path because his gut is a mess. If he couldn't handle nystatin I doubt he could tolerate Lamisel either, at least right now. He has been very irritable lately (which I assume is being caused by the yeast) or is this die off reaction? Also the past two days he has had that bakers yeast type BM again, is that die off too? Does anyone know how you can tell that the yeast treatment is working? My DH said just stop the ABX and be done with this. I am considering it if this weird yeasty diarrhea BM continues. It seems to happen an hour after I give him his ABX. My son is sick of taking meds/supplements and just wants to stop. He's getting to that age (almost 13) where he wants to be more independent. I don't blame him either, who would want to. He'd never take any meds or supplements if I didn't make him take them. He tells me he doesn't have PANS anymore so he shouldn't need to take any of these pills. The Integrative MD told us that as long as he's on ABX this merrygoround is going to continue.He said when he is on all of the supplements and VSL#3 for at least 2 full weeks we should consider stopping ABX so his gut can heal. And when we do stop to give him Ibuprofen for 5 days to hopefully stop any inflammation or recurrence of PANS symptoms, but we can't use Ibuprofen now because his stomach is too sensitive. He's does not believe in tapering off ABX. We are also looking into the homeopathic route after abx is discontinued. Any comments or suggestions on my post would be greatly appreciated. If not for anything else but assurance that I'm heading in the right direction. Thank you Link to comment Share on other sites More sharing options...
T_Anna Posted April 11, 2013 Report Share Posted April 11, 2013 Does DS have any PANS sysmptoms now? Tics/OCD/Thoughts? Have you run any tests to see where his titers were on any of the triggers. If you think that DS (and the rest of the family) can handle the risk of PANS coming back, and he is relatively symptom free, then stopping ABX may not be disastrous. It seems that several people here have tried tapering off and see results rather quickly if things aren't going well. You can try to change the probiotics and drop some of the other supplements for a while and see if that helps (while keeping the abx). Just my .02. T.Anna DS14 Link to comment Share on other sites More sharing options...
sf_mom Posted April 11, 2013 Report Share Posted April 11, 2013 One thing you might check from comprehensive stool results is his level of pancreatic function and digestive enzymes. If those are also depleted adding enzymes will help to breakdown the proteins from food in the stomach that are potentially crossing into blood stream, help eradicate yeast and help the good bacteria to reestablish itself. We saw an increase in mood liability, AD/HD type symptoms, eczema, rashes when treating yeast. It took almost 12 weeks for those symptoms to settle. Even after the 12 weeks of treatment we feel yeast is an ongoing issue but at much lower level. We are also dealing with heavy metals and they tend kick up the yeast. Diarrhea and soft stool (like soft serve ice cream) is typical with yeast. I do believe you are probably dealing with much more than just yeast. However, if you want to stop antibiotics make sure the yeast fully addressed prior to taking him off antibiotics so you can get a clear perspective on how well his immune system is functioning and not confuse yeast with other potential issues. I would also recommend trying some enzymes specifically for yeast (Candex - Pure Essence) or homeopathy (Candidate) on top of herbals. Start one thing at a time and ramp up each supplement. Expect herx. Link to comment Share on other sites More sharing options...
jtp Posted April 11, 2013 Author Report Share Posted April 11, 2013 T. Anna, Thanks for your 2 cents . He's doesn't have any PANS symptoms(mainly tics and impulsivity ) at this time, but he is very irritable so it could be the beginning of something. He has school vacation next week so I suppose if we need to try and stop to see what happens it would be a good time. Does DS have any PANS sysmptoms now? Tics/OCD/Thoughts? Have you run any tests to see where his titers were on any of the triggers. If you think that DS (and the rest of the family) can handle the risk of PANS coming back, and he is relatively symptom free, then stopping ABX may not be disastrous. It seems that several people here have tried tapering off and see results rather quickly if things aren't going well. You can try to change the probiotics and drop some of the other supplements for a while and see if that helps (while keeping the abx). Just my .02. T.Anna DS14 Link to comment Share on other sites More sharing options...
jtp Posted April 11, 2013 Author Report Share Posted April 11, 2013 (edited) SF Mom, Thanks for replying. Unfortunately the stool test did not cover pancreatic function and enzymes so I have no idea what his levels are. I have often wondered if he was actually absorbing the proper nutrients since he is very small for his age. Although when he first started abx within a few months he grew 2 inches and gained 10lbs. Now that has stopped. He's a very picky eater and yes his sugar consumption was huge before abx and during. He doesn't eat any vegetables at all. The only thing we can do is restrict sugar intake as much as possible. I'm going to see if we can check his function and enzymes at our next appt. Great idea thanks. I can't believe it took 12 weeks for things to settle down. I guess I'm in it for the long haul here. I had noticed an increase in ADHD symptoms for a while but since we started treating it's been his mood mainly. I'm glad to hear that the diarrhea and soft stool is normal for yeast because I was getting worried as to why this was happening. I certainly hope that we are not dealing with much more at this time. Our integrative seems to think that yeast has been an issue even prior to PANS and I wouldn't be surprised since he has always had a bad diet. Your reply was very helpful. Edited April 11, 2013 by jtp Link to comment Share on other sites More sharing options...
LNN Posted April 11, 2013 Report Share Posted April 11, 2013 jtp - we are in a similar situation. My DS has had simmering issues (not full flare) for about 7 weeks. We did a blood test for candida yesterday and its high in the list of likely suspects. I stopped all abx last week but then DS got a cold and he started feeling like "a mistake" and that maybe he shouldn't have been born. So I immediately broke into my emergency stash of augmentin because I didn't want to risk having a snotty sinus cavity turn into a strep incubator. Once we're done with 10 day regimen on Saturday, I'll stop the abx and he'll be abx-free (that's the plan anyway). Because it seems counterproductive to fight yeast while on abx and since I think the behaviors (mostly anger, adhd, unaware of how his actions are p*ssing people off) point toward yeast, it seems worth a trial of no abx to see if we can make headway. Heaven knows being on them wasn't resolving things. Like you, our spring break is next week and I'm waiting until tomorrow to start enhansa (and garlic) because past herxes have cost him friendships. Better to ruin a stay home vacation than risk irrational behaviors at school. Fingers crossed for you. Our past yeast herxes have only lasted a week or so. But it's nearly impossible to know if you're on the right track when in the middle of the storm. Is this h**l a herx or is it Pandas or lyme or something else? I've only been able to remind myself of what the evidence suggested and hold my breath. But usually, when we've been in the right path, I've seen signs within 2 weeks. If not, I tend to look for other things. It's very frustrating. I can't comment on the BMs - DS doesn't let me inspect them anymore and he doesn't look. The other night, I asked him if his stools were firm and he looked at me like I had two heads. "How should I know?" he asked. My DH said "don't you look at your own poop?" DS said "No! that's gross" to which I told him that I thought everyone did - dogs, people...that you could tell things about your own health by being a poop-ologist. He just made a mental note that this was yet another story he could write in his memoir about his nutso mom and his crazy childhood. Link to comment Share on other sites More sharing options...
smartyjones Posted April 11, 2013 Report Share Posted April 11, 2013 oh LLM -- hilarious, as always! you know i will be waiting for that enhansa report. i'm thinking about adding that in the summer. my kids have been ART-like testing okay for yeast, but recently both have been sick and now have very small bumps on their faces -- i'm wondering. please be sure to keep me updated! Link to comment Share on other sites More sharing options...
ajcire Posted April 11, 2013 Report Share Posted April 11, 2013 Small bumps on their faces? What is that significant of? My ds has always had them... Ped just said it was nothing. Link to comment Share on other sites More sharing options...
LNN Posted April 11, 2013 Report Share Posted April 11, 2013 Yes, I was wondering if you knew of an association with bumps on the face and yeast too. DS has had bumps for several months and I just attributed it to "winter skin" stuff. I'll let you know on the enhansa. Fingers crossed it does something. The week that DS returns to school, he takes a grade-wide state cognitive assessment test. He didn't do very well when he took it in 3rd grade and it's been my goal for the past 2 yrs to get him healthy so he could shine/redeem this time around. Doesn't look like that will be happening. He was so good just a few months ago. I actually thought we were almost done. In the words of Spongebob "Why must the Universe confound me so?!" Link to comment Share on other sites More sharing options...
philamom Posted April 12, 2013 Report Share Posted April 12, 2013 (edited) Oh LLM, I'm so sorry the road's a little bumpy for your son right now. I hope you get him back on track real soon. Stop thinking about them state assessment tests - I think you know that Speaking of poop-ologist, I ran 10 vials of stool tests on dd today (I think lab mad a mistake on the amount they gave me). Dd couldn't wait to put the gloves on and mix & shake them with me. She analyzed each vial and made hypothesis on what may turn up. Since she's not in school much, can I give her an A+ in Science for the year Edited April 12, 2013 by philamom Link to comment Share on other sites More sharing options...
jtp Posted April 12, 2013 Author Report Share Posted April 12, 2013 jtp - we are in a similar situation. My DS has had simmering issues (not full flare) for about 7 weeks. We did a blood test for candida yesterday and its high in the list of likely suspects. I stopped all abx last week but then DS got a cold and he started feeling like "a mistake" and that maybe he shouldn't have been born. So I immediately broke into my emergency stash of augmentin because I didn't want to risk having a snotty sinus cavity turn into a strep incubator. Once we're done with 10 day regimen on Saturday, I'll stop the abx and he'll be abx-free (that's the plan anyway). Because it seems counterproductive to fight yeast while on abx and since I think the behaviors (mostly anger, adhd, unaware of how his actions are p*ssing people off) point toward yeast, it seems worth a trial of no abx to see if we can make headway. Heaven knows being on them wasn't resolving things. Like you, our spring break is next week and I'm waiting until tomorrow to start enhansa (and garlic) because past herxes have cost him friendships. Better to ruin a stay home vacation than risk irrational behaviors at school. Fingers crossed for you. Our past yeast herxes have only lasted a week or so. But it's nearly impossible to know if you're on the right track when in the middle of the storm. Is this h**l a herx or is it Pandas or lyme or something else? I've only been able to remind myself of what the evidence suggested and hold my breath. But usually, when we've been in the right path, I've seen signs within 2 weeks. If not, I tend to look for other things. It's very frustrating. I can't comment on the BMs - DS doesn't let me inspect them anymore and he doesn't look. The other night, I asked him if his stools were firm and he looked at me like I had two heads. "How should I know?" he asked. My DH said "don't you look at your own poop?" DS said "No! that's gross" to which I told him that I thought everyone did - dogs, people...that you could tell things about your own health by being a poop-ologist. He just made a mental note that this was yet another story he could write in his memoir about his nutso mom and his crazy childhood. LLM, Sorry to hear you're fighting yeast like us. This is exactly what I had hoped would not happen. Anyway I asked our integrative md about Enhansa he said it's a good supplement and would recommend it but not at this time.He told us not to give this to him until a few months down the road. He said it can also be tough on the gut. We should not give our son Ibuprofen either until his issues are better. That's why he suggested for us to stop ABX after treating with everything he prescribed for at least 2 weeks. We have only be giving him VSL # 3 for over a week and started the Oregano pills two days ago. In a few days we start the Grapefruit seed supplement. It will be a couple weeks before he will be in that position, but we'll take it day by day. I do not have an easy time checking the BM's my son tries to sneak when he goes to the bathroom. He tends to fib a little just to get me out of his face. I keep explaining that I will stop checking once he's doing better. I'm very nervous about stopping ABX but if it's necessary it has to be done. My son think's I'm crazy too and tells me I'm over protective. I've told him some stories about my childhood memories and I can just see the stories he's going to tell his kids. Let me know how you do over vacation week. Link to comment Share on other sites More sharing options...
jtp Posted April 12, 2013 Author Report Share Posted April 12, 2013 My son has the bumps on his face too. I thought yeast can cause Acne, but I could be wrong. Link to comment Share on other sites More sharing options...
rowingmom Posted April 12, 2013 Report Share Posted April 12, 2013 (edited) Anyway I asked our integrative md about Enhansa he said it's a good supplement and would recommend it but not at this time.He told us not to give this to him until a few months down the road. He said it can also be tough on the gut. We should not give our son Ibuprofen either until his issues are better. That's why he suggested for us to stop ABX after treating with everything he prescribed for at least 2 weeks. We have only be giving him VSL # 3 for over a week and started the Oregano pills two days ago. In a few days we start the Grapefruit seed supplement. It will be a couple weeks before he will be in that position, but we'll take it day by day.DD11, who has been on combo abx for 2 years now, developed an itchy rash (but not allergic urticaria), a huge upswing in motor/vocal ticcing and increase in giddy behaviour/urinary frequency when we added 1 drop of grapefruitseed extract to her supplements. I didn't figure that one out for a week! My first thought was yeast although she has never had yeasty symptoms and BM's are fine. There is no igg yeast testing available in NY or ONT. I told the LLMD I wanted to address yeast with a more natural protocol as we are weaning off abx. We have been using fairly high-dose probiotics since treatment started. DD is now taking 1 capsule oil of oregano capsule daily, 1 cap Life Extension Super Bio-curcumin daily and 2x caps ProtoCol C.Away (caprylic acid, paud'arco, black walnut oregano oil) daily as well as raw garlic. Her ticcing has decreased from about a 6 to a 3/10 (but still there) since beginning these supplements. The giddy behaviour/urinary frequency has disappeared. I, myself am now scared of grapefruitseed extract. If the GSE was indeed killing off yeast and causing the reactions I noted, it was much more potent than any of the other supplements I have mentioned. I am now scared of it. If we use it again, I will be applying it to the bottom of the feet to start off. Edited April 12, 2013 by rowingmom Link to comment Share on other sites More sharing options...
jtp Posted April 12, 2013 Author Report Share Posted April 12, 2013 Anyway I asked our integrative md about Enhansa he said it's a good supplement and would recommend it but not at this time.He told us not to give this to him until a few months down the road. He said it can also be tough on the gut. We should not give our son Ibuprofen either until his issues are better. That's why he suggested for us to stop ABX after treating with everything he prescribed for at least 2 weeks. We have only be giving him VSL # 3 for over a week and started the Oregano pills two days ago. In a few days we start the Grapefruit seed supplement. It will be a couple weeks before he will be in that position, but we'll take it day by day.DD11, who has been on combo abx for 2 years now, developed an itchy rash (but not allergic urticaria), a huge upswing in motor/vocal ticcing and increase in giddy behaviour/urinary frequency when we added 1 drop of grapefruitseed extract to her supplements. I didn't figure that one out for a week! My first thought was yeast although she has never had yeasty symptoms and BM's are fine. There is no igg yeast testing available in NY or ONT. I told the LLMD I wanted to address yeast with a more natural protocol as we are weaning off abx. We have been using fairly high-dose probiotics since treatment started. DD is now taking 1 capsule oil of oregano capsule daily, 1 cap Life Extension Super Bio-curcumin daily and 2x caps ProtoCol C.Away (caprylic acid, paud'arco, black walnut oregano oil) daily as well as raw garlic. Her ticcing has decreased from about a 6 to a 3/10 (but still there) since beginning these supplements. The giddy behaviour/urinary frequency has disappeared. I, myself am now scared of grapefruitseed extract. If the GSE was indeed killing off yeast and causing the reactions I noted, it was much more potent than any of the other supplements I have mentioned. I am now scared of it. If we use it again, I will be applying it to the bottom of the feet to start off. Rowing Mom, Thanks for the post. I will keep a close eye when I add in the grapefruit seed capsule. Unfortunately, It's a capsule so I can't go slow with it. Maybe that's why he suggested to add this GSE last. Link to comment Share on other sites More sharing options...
SSS Posted April 12, 2013 Report Share Posted April 12, 2013 GSE is very powerful for yeast, but also said to be a cyst buster for Lyme. Link to comment Share on other sites More sharing options...
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